I said, “I think we should see other people — I’m considering going back to Justin.” He said, “I respect your choice and your decision, but I hope you’ll stick with me.”

I said, “I want to break up.” He said, “Don’t give up on me yet.”

I said, “I don’t want to need you.” He said, “We’re in this together.”

I said, “I am not getting anything out of this anymore.” He said, “Trust me.”

I said, “My goal for the year was to not bother you, and I failed.” He said, “That’s a terrible goal. You can bother me as much as you like.”

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The most complicated, multi-faceted, unreasonable, needy, irrational, and humbling relationship in my life is with Dan.

My doctor.

I’ve shared my diagnosis story. I’ve written about the moment Dan said, “bone marrow transplant.” I’ve articulated a small portion of my version of my doctor/patient relationship, but it’s time to delve deeper.

My life changed when I was told I had MS. I went from seemingly young, healthy, and active to a life filled with uncertainty, medications, disease, and disability. Looking back, there’s a paradigm shift that I can’t ignore – then versus now. Yes, I am the same person, but I can never go back.

Disability Buddies

I joined a program this year as a disability buddy with medical students from Case Western Reserve University. The goal of the program is to pair med students who have an interest in the disability experience, and people with disabilities. Through this partnership the med students hear firsthand accounts, speak with carers and caretakers, witness the difficulties in navigating an ableist world, and hopefully, form friendships.

On our first meeting, I chatted with a group of young aspiring doctors with big dreams and bigger hearts. I shared my story and as the night and conversation progressed, I stumbled through my thoughts and feelings about my relationship to the many doctors in my journey that I had never quite articulated. One woman inquired what stood out to me as a unifying element for the doctors I liked and respected. Without pause I answered: Touch, attention, and an understanding for my life not just the science of my disease.

As I reflect and recount, I viscerally feel the overwhelming joy and bittersweet feelings I have as I spoke of Dan.

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There is no doctor in my life whom I respect more. There is no man on this planet who has made me cry as often as him. There’s no person who possesses the sheer force to administer hope and the simultaneous ability to take it back. I have faith in his intentions knowing he can’t control the outcome. I can’t think of a more necessary or dysfunctional or wonderful relationship than what I have with him.

Decision Fatigue

Do you remember being a child and thinking someday I’ll grow up and get to make all the decisions? The joke being, when you do grow up, and you do make the decisions, all you really want is for someone else to bear that burden; to tell you what to do.

Decision fatigue is real. It’s real for women bearing the administrative burden of running a household and life. It’s real amidst a crumbling democracy, trying to figure out how to both stay sane and resist the insanity happening around us. It’s real for chronic illness and disease in trying to grasp health as it becomes more and more elusive. I’m so very tired figuring out how to exist, much less thrive in the face of so much adversity.

I’ve reached points in my life since diagnosis where I couldn’t handle the weight of my health decisions. I longed for the one way to do things. The one medication to take. The one thing that would help. The decision for treatment and management was always mine, but I needed a partner, an interpreter, a guide. I needed someone to tell me what to do.

Enter Dan

From our first meeting, I asked Dan what I could expect from him as my doctor, our relationship, my disease management. A few years in, he told me I was someone he thought of when designing research and positing questions about multiple sclerosis. Whether or not he knew what he signed up for, in some ways, I handed my life, my care, my disease burden, and the hope of a cure over to him. Over many years and countless appointments, his role as attorney, judge, jury, executioner and savior solidified.

What a phenomenally unfair burden to place on another person. And yes, I could argue that he chose to go into medicine. He was interested in MS. He signed up for the inequity of the power dynamic in the doctor/patient relationship. But I won’t; I can’t.

Human to human, he takes care of me and at times, I am incredibly ungrateful. I often wonder how he stands it, stands me. Does he get something out of it? He is perpetually professional, kind, compassionate, and understanding. He rides the waves of my emotional volatility with a calm serenity. He explains the science and data, answering every question, and also offers his counsel as an expert clinician and my friend; always my stalwart supporter.

The Limits of Medicine

At one point in my life, I thought medicine had the answers. You break a bone; a doctor sets it. You get a sinus infection; the doctor gives you medicine that makes it go away. You receive a diagnosis; they present the cure. In the world of chronic illness and disease, there are no cures. There is no test, no pill, no treatment plan that cures my disease or repairs my broken nervous system.

For years I looked to Dan to make it stop, make it go away. I wanted him to take away my pain, to erase my need to see him. I craved a different world where he wasn’t in my life. My entire need of him was a living, breathing, profound contradiction.

I entered our appointments with a spiritual reverence, my life in his hands. Depending on the day, hope turned to resentment. Faith turned to skepticism. Partnership turned to avoidance. And yet, I still needed him. I still need him.

Want vs. Need

The doctor/patient relationship will never be equal. I need him, but I don’t want to need him. I am so lucky to have found him, but I wish I never met him.

During every visit, for a moment or two, we talk about work. I long for a life where I got to handle press and media interviews for him and his research. I wish I could ghost write a book for him that trains all doctors on how to navigate demanding patients (AKA me). For those few seconds, we are colleagues. I relish those moments. I feel separate from my disease and what brought us together. I get to feel — for a fleeting moment — our equality and shared professional respect.

The reality is that I need his constancy and stoicism in the face of adversity. I need him to bear the weight and responsibility of my disease progression. I need, at times, to have someone to be mad at, because I can’t hate my body. I can’t find fault in myself and the things far exceeding my control, so I blame him.

Words are Paltry Indeed

I have zero idea how to say thank you or even if thank you is the appropriate phrase. Words are my currency and yet there is no clear stop gap or “the end” for him and me. Part of the reason I could thank my transplant nurse Kerry was because the medical relationship we had was ending. There was a clear exchange and timeline. I don’t have an end date with Dan. There is nothing clear about our relationship. As I write, I acknowledge the sheer weight I’ve placed on him and the utter incongruity of what I want from him and what I am willing to give.

He is enmeshed in my life and integral to my survival even when I ignore him, fight him, resent him.

When I teach others about personal advocacy, I forget the assumption that a doctor like Dan is needed on the other side of that conversation. A doctor with his patience, superb communication skills, and benevolence is required for patient safety and personal advocacy and by no means a forgone conclusion in medicine today.

I am so lucky to have him as my partner and guide. It’s not unconditional love, but rather unconditional patience, unconditional understanding, unconditional theorizing, and unconditional perseverance.

Thank you, Dan for all of your unconditionals where I am concerned.

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The best days of your life are the ones you are so busy living that you forget to take pictures, maybe the same is true for the best relationships. They are messy. They are complicated. Through immense joy and excruciating pain, Dan has been with me. He is a witness to my life.

In all our years together, I don’t have a single photo with him. We’re so busy living, striving for more, problem solving, enduring the bad, and mitigating uncertainty, that we just exist. Together.